Plastic Surgeons Weigh In On The Ethics Of Celebrity-Inspired Procedures“And while we’re all for a person’s right to choose whether or not plastic surgery is for them, we couldn’t help but wonder about the ethics behind celebrity-inspired procedures. For instance, what do doctors do if they think a client’s desire for change verges on obsession? Do they refuse procedures or go a different route?”

This past July. an $8.8 million dollar, camp-like nutrition study funded by the National Institutes of Health (NIH) was shut down, resulting in a vast internal investigation at Purdue University, one of the nation’s top research institutions, and raising several issues about research ethics and the role of institutional review boards (IRBs), according to Undark. What went wrong? A video of an adolescent girl showering in a dormitory was posted on social media.

The study, Camp DASH (Dietary Approaches to Stop Hypertension) was designed to evaluate effects of a low sodium diet on 11- to 15-year-old boys and girls with elevated blood pressure. Purdue University were set to host the children in campus housing for seven weeks in the summer.

The University President Mitch Daniels shut down the study two weeks early after the incident was reported to the police and the county prosecutor began looking into additional allegations of crimes among adolescents in the study. Daniels An investigation led by Purdue University’s Vice President for Ethics and Compliance, Alysa Christmas Rollock was launched soon after. Rollock’s investigation, which Purdue University released November 28, shows over “thirty incidents of threats, violence, or sexual abuse among the study participants, many involving calls to campus police. (Two participants were arrested in the first few days of the study.)” Additionally, Rollock reported several “instances of non-compliance on the part of the study’s principal investigator, or PI, Connie Weaver, that may have contributed to unsafe conditions for the minor participants” as well as “various conflicts of interest inherent in the study’s design.”

Dr. Celia Fisher, Professor of Psychology and Ethics at Fordham University and Director of the University’s Center for Ethics Education explained to Undark that “even if the NIH approved the trial design for the Camp DASH study, they would have relied on the university’s IRB to work out the details for the protection of study participants.”

Fisher, who has been working in the field of research ethics involving vulnerable populations for several decades, and who chaired the creation of the current American Psychological Association Ethics Code, said that she would have expected Purdue University’s IRB approval to be contingent on the “gold standard in counselors.” She continued, after discovering the counselors were primarily undergraduate students, “To have a sleepover camp for young teenagers supervised by 18 to 21-year-olds who do not have an adult supervisor there monitoring…I can’t even.”

Because no federal regulations require that members of IRBs be “scientists or know anything about scientific ethics,” Fisher explained, “not all IRBs are created equal…and vary significantly from institution to institution.” IRBs are typically pulled from university faculty and not paid for their work on the board. She added that because there is a “diverse range of expertise” among IRB members that is not well-suited to every study, “They [IRB members] may try very hard to apply ethical standards, but if they have no understanding of the type of research that’s being conducted, then they may not be able to identify all the risks and benefits of the participation.”

The problem, Fisher concluded, with most university IRB members is that the “lack of expertise and the lack of funding that they get” despite being genuinely interested in the protection of human subjects.”

As a result of the investigation, the study’s remaining three summers of the study are cancelled and “all of the collected data will be thrown out.” The biomedical institutional review board (IRB) of the University stated in late November that future study applications submitted by Weaver will not be reviewed until she submits a “comprehensive remediation plan,” including training and oversight by an outside mentor, according to the article.

Weaver, the study’s PI, released a statement last Tuesday that said, “I am deeply saddened by the instances that caused Camp DASH to end early. As the principal investigator, I accept responsibility for events that occurred at Camp DASH. The safety and security of research participants always comes first.”

“World AIDS Day takes place on the 1st December each year. It’s an opportunity for people worldwide to unite in the fight against HIV, to show support for people living with HIV, and to commemorate those who have died from an AIDS-related illness. Founded in 1988, World AIDS Day was the first ever global health day.”

The theme of this year’s World AIDS Day, as promoted by NAT, is “Let’s End It.” This year, NAT is asking everyone to join the fight to end the negative impacts of HIV including isolation, stigma and HIV transmission. According to the World Health Organization (WHO), there were 36.7 million people living with HIV at the end of 2016 and 20.9 million people living with HIV were receiving antiretroviral therapy globally. This year, WHO is advocating for access to safe, effective, quality and affordable HIV services, medicines and and diagnostics other health commodities for all those in need with their slogan “Everybody counts.”

Please visit the World AIDS Day website for more information about the history of the day and how to get involved, support and show solidarity with the millions of people living with HIV.

As today is World AIDS Day, the Ethics & Society blog would like to reflect on the HIV research, as well as research on the areas, populations, and co-morbidities that are still in need of research attention, that has been done by previous fellows of RETI. Please visit our Publications and Presentations page to read more about our fellows’ HIV research including:

Additionally, please watch a short video created by RETI Alum Dr. Brandon Brown on Five Misconceptions about HIV.

The HIV and Drug Abuse Prevention Research Ethics Training Institute is now accepting applications for its 2018 session taking place July 10-18! Please visit our website or contact the Program Administrator Rimah Jaber (ethicsinst@fordham.edu) for more information. The deadline for applications is February 26, 2018.

“You always have the poor with you…” (Mark 14:7), prophetic biblical words presented to us by Jesus Christ, exposing humanity’s inability to address those that live outside the reach of protection by state and government conditions. In ATD (All Together in Dignity) Fourth World Movement, extreme poverty is the focus as its base feature in a primary methodology in the developmental policy approach, addressing forms of poverty in collaboration with the United Nations. These forms represent the underlying assumptions associated by the behaviors of those who live in extreme poverty. Persons who live in destitute conditions due in large part of the status of poverty, accumulate behaviors relating to humiliation and exclusion. The NGO ATD Fourth World addresses these behaviors by focusing and introducing the removal of humiliation and exclusion to those of dignity and inclusion.

Understanding that the economic approach is not the only way extreme poverty paralyzes individual and social growth, ATD’s founder Father Joseph Wresinski brought to the public square an awareness on extreme poverty as a violation of a person’s human rights stating that, “Wherever men and women are condemned to live in extreme poverty, human rights are violated. To come together to ensure that these rights are respected is our solemn duty.” The depths of information within the statement preludes the tools and perspectives on achieving a new normality in terms of how poverty affects short and long term on individuals and societies. Of remarkable notice is the dearth of common thought where poverty is highlighted by a monetary achievement. Thirty years ago on October 17th, 1987, Father Wresinski formed a “Call to Action” on the steps of a park outside of Paris, France where 100,000 people stood in solidarity to those victims living in the harshest of conditions per each society. Completely void is a financial solution from the crippling, disabling realities of living in extreme poverty. Five years after that “Call to Action,” the United Nations adopted the “International Day for the Eradication of Poverty.” On October 17th of each year, there is a commemoration to this commitment described in the words of Father Wresinski at the United Nations known as the “International Day for the Eradication of Poverty.”

Dealing with exclusion and humiliation is ATD Fourth World’s mission and overreaching ambition. Its goals begin with both these forms associated with persons living in extreme poverty, and acknowledges that through commitment and consistency a new way of living becomes achievable. Within its name as an organization are its organizational leadership components using artifacts, espoused values and underlying assumptions, all necessary to address the sociological cultural habitat transcendent throughout all who live in extreme poverty, regardless of location, state or government.
Humiliation is one espoused value addressed by removing titles associated with poverty as each of those who volunteer living in extreme poverty are “Human Rights Activists.” Immediately a title of respect is given to not only the individuals within the social group, but also visible and accountable as such for the entire outside world to witness. It is in removing these indignant titles of poor or destitute persons that respect towards one another begins to allow a framework providing an avenue of eradication of poverty. The real-time effects are evident in the eyes and prideful assumption of arms of the men and women who now wake up having a purpose to disallow the evolution of extreme poverty and its forms to prevail within their everyday lives, as parents, neighbors and citizens. Respect and dignity are the new cultural developments centered within the core values of those ascribed to live in extreme poverty conditions. Dignity is the new norm associated against humiliation.

Exclusion is another consequential form of poverty as all persons, despite the government they dwell in, are exempted from making and participating as change agents. The idea to impact a new way of life by assigning those who live within the confines of such conditions as experts is a functional and rational approach when issuing policy and procedural frameworks. ATD works tirelessly to develop a set of allies with the policy makers locally, nationally and internationally. As a non-governmental organization to the United Nations, ATD Fourth World looks to bring voice to those living in extreme poverty and thus removing its moniker of “Fourth World” known as the silent majority. Those ravished to live in silence is where extreme poverty serves as a violent way of life depriving those who cannot willfully defend themselves against these violations. Inclusion is its most powerful component and partial eradicator of the deafening form of poverty known as silence.

At the international platform, the “International Day for the Eradication of Poverty” brings activists, people who live in extreme poverty, to the position of delegates through the various established relationships. This 25-year relationship at the policy change level in the United Nations has endorsed the experiences and living testament to an audience which often times compromises this voice through absence and condemnation.

Through inclusion and respect for the dignity of persons, those who live in poverty become change agents within an ethical infrastructure which begins at the macro level – United Nations, with hopes and intent to influence regular behavioral actions at the micro level – societal existence. The telos of such an approach is as a twofold transformation. On one hand, it certainly empowers those who live within the exhausting nature of extreme poverty and are exposed to such human rights violations, primarily their accepted living conditions and lack of adequate resources. It preemptively places each activist with an opportunity to expand and impart their knowledge and resilience to an actively listening audience. The second transformation lies within the infrastructural community where policy makers stand in the multilateral landscape of listening and acknowledging the component of expert cases to their decision making process. These experts, of learned experience, come in the form of those activists who live in the demoralizing state of extreme poverty.

The “International Day for the Eradication of Poverty” has become a pillar of consistency on the ethical dilemma, cultivating the conversation on poverty and its humanitarian dereliction to people of all walks and creeds. It is encompassing the difficult questions on policy overreach while securing the removal of inequality ravaging the ethical responsibility of each person, society and government. A once seemingly daunting topic and task of every kind, poverty now has a face with a name, and it may resemble the us we are attempting to overlook.

Please visit fordham.edu/ethicsandsociety for more information about Fordham University’s Master’s in Ethics and Society, or to apply. For inquiries about the Master’s in Ethics and Society program, please contact Bryan Pilkington, PhD, Director of Academic Programs at bpilkington1@fordham.edu.

]]>https://ethicsandsociety.org/2017/11/14/fordham-university-ethics-society-masters-student-working-to-eradicate-poverty/feed/0ethicsandsocietyFordham University’s Dr. Celia Fisher Weighs in on Researchers Using Real Guns in Study with Children in Michttps://ethicsandsociety.org/2017/10/24/fordham-universitys-dr-celia-fisher-weighs-in-on-researchers-using-real-guns-in-study-with-children-in-mic/
https://ethicsandsociety.org/2017/10/24/fordham-universitys-dr-celia-fisher-weighs-in-on-researchers-using-real-guns-in-study-with-children-in-mic/#respondTue, 24 Oct 2017 18:50:08 +0000http://ethicsandsociety.org/?p=5614More Fordham University’s Dr. Celia Fisher Weighs in on Researchers Using Real Guns in Study with Children in Mic]]>

In a recent study, researchers asked children ages 8 – 12 years old to watch 20-minute clips of PG-rated movies that either included or did not include gun violence. The objective of the study was to test whether children exposed to gun violence in movie clips would 1) handle a real gun longer and 2) pull the trigger more times than children not exposed to the same clip edited to not contain gun violence.

The children were then placed into a university laboratory containing toys, games and a real, 0.38 caliber gun which was disabled and modified to have a sensor counting trigger pulls with the door closed. A research assistant sat in an exterior greeting room if the children had questions. The study found that children who watched the clip containing guns were more likely to use the guns themselves than the children who watched the clip that did not contain guns (median trigger pulls were 2.8 compared to 0.01 and median number of seconds holding the gun were 53.1 compared to 11.1, respectively). Roughly 27% of children informed the assistant about the gun or handed it over and a small number aimed the gun at other children.

Although this study was approved by the scientists’ institutional review board, many ethicists believe the potential harm of the study was “not worth it,” including Dr. Celia Fisher, director of Fordham University’s Center for Ethics Education. “In any kinds of ethics evaluation, we have to balance the risk against the benefit. I think the study’s results are not of great scientific importance because we already know what the result is going to be. We have decades of scientific research showing that kids will imitate aggressive behavior they view on the TV screen,” Fisher told Mic.
In regard to the children’s age (median of 9.9 years old, Fisher explained, “it’s really difficult to know over the child’s next year the extent to which they would be influenced by this experiment. As good as the debriefing was, it doesn’t necessarily outweigh the experience of that child having an adult implicitly condone them picking up a gun.”

“[The test subjects] left the study with insight into themselves that they otherwise might not have had — insight which might not even be true, but rather enforced by the conditions of the study,” Fisher said. “Telling a child they did something retrospectively that could’ve been harmful is inflicted insight that could make the child feel ashamed. It could affect their self-esteem.”

I first stumbled upon the issue of palliative care during a particularly hard time in my life. I was twenty years old, and for the first time having to confront the realities of watching a loved one die. Up until then, death had been a decently abstract concept to me. My grandmother had passed away when I was a child, but I was too young to be exposed to any part of the process. My uncle had also passed away when I was a teenager, but due to the suddenness of the death and geographical distance, I did not play a role in the event. I had never attended a funeral, let alone seen a corpse. The case of Monica was very different. For the first time, I became intimately involved in the dying process; and through this, became aware of the workings of the hospice and palliative care system that has become incredibly common throughout the country.

Monica was my mother’s best friend, and a pseudo-mother to my sister and I. In 2007, doctors found a malignant tumor in her colon, leading to multiple surgeries and the administration of rounds of chemotherapy. After some years of remission, the cancer returned in 2011, spreading to more of her internal organs. Once again, different treatments were administered, with waves of optimism and pessimism. Ultimately, in the summer of 2015, after attempting a failed experimental treatment, she was told that there was no more the doctors could do, and that she probably only had a couple more weeks to live. Receiving this news, she opted for in-home hospice care, to be able to spend her last days comfortably with family and friends.

Hospice care is becoming an increasingly common end of life plan in the United States. In the past decade, the number of hospice patients has more than doubled. In 2009, 42 percent of all deaths were under the care of a hospice program.1 According to the National Hospice and Palliative Care Organization, hospice care “ involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support” to help allow the patient to succumb to death in best way possible.2 The phrase they use is that they are shifting the focus from curing to caring. Typically, this involves a family member serving as the primary caregiver, with members of the hospice staff making regular visits and providing 24 hour on-call assistance.2 Central to hospice care is the idea of palliative care, which makes sure the patient is able to die in the most pain-free and dignified manner.

In Monica’s case, her husband and sons divided the role of primary caregiver, and a hospice nurse came once a day to check in on her and the family. As someone who was at Monica’s home almost permanently for the final week of her life, I witnessed the stress that the role of primary caregiver placed on her husband and sons. This issue especially came to light as Monica’s pain progressed to a point that the dosages of sedatives she required made her lose consciousness. At that point, due to emotions and stress, the eldest son took over most of the care responsibilities. Unable to communicate with his mother, it became his responsibility to gage when she was in pain, based on indications given to him by the hospice nurse. I watched him struggle to decide when she a dosage, afraid on one hand to let her suffer, and on the other to accidentally hasten her death. This struggle led me to reflect on the morals and ethics entwined in the hospice and palliative care process, as well as related issues such as euthanasia and physician-assisted suicide.

One of the more controversial aspects of palliative care is what is referred to as palliative sedation, or terminal sedation. Broeckaert, who introduced the term palliative sedation, defines it as “the intentional administration of sedative drugs and combinations required to reduce the consciousness of a terminal patient as much as necessary to adequately relieve one or more refractory symptoms”.3 There have been many concerns about the practice, as the lack of consciousness often results in the patient’s’ inability to continue to ingest food or water. Some critics of the practice have gone so far as to call it slow euthanasia or euthanasia in disguise.4 Broeckaert is quick to point out that the two practices are ethically different because of their intentions. Based on his definition, the intention of palliative sedation is to relieve the refractory symptoms, most commonly pain and nausea, not to kill the patient. In euthanasia, as well as physician-assisted suicide, the explicit intention is to end the patient’s life. As Have states, “sedation is not itself the aim of the intervention but merely a means; the aim or intent is to relieve symptoms”.5 Additionally, studies have found that in most cases, palliative sedation does not hasten death, and the survival rates of patients with palliative sedation and those without do not differ.1

So why does this continue to be an issue discussed? One explanation for this might be that in countries with legal euthanasia, there has been a decrease in the number of euthanasia cases and an increase in cases of palliative sedation.6 Many think this is because physicians feel more comfortable performing the latter, and therefore choose it over the former. While the intentions may be different, they both lead to the same end. As Raus states, “in the U.S. Supreme Court decisions Washington v. Glucksberg and Vacco v. Quill, Justice O’Connor claimed that there was no need to address the question of legalization of PAS, as patients could legally obtain pain relief to the point of unconsciousness”.7 Intention aside, because of its role as a treatment administered to the terminally ill, it is grouped together with more controversial practices, and presented as a substitute.

This controversy led me to reflect on the ideas of intention and autonomy. I have always been a fervent believer in the power of autonomy, and in relation, the importance of patient’s rights. I believe that a person has the right to control what happens to their life, and to choose their own death if they see fit. The intention to kill that a physician would have to possess in the case of euthanasia or PAS is only given to her from the patient’s intention to be killed. If the patient did not intend to be killed, only then would the physician’s intention to kill be immoral, because the physician is taking control over a life that is not hers. This view might stem from my lack of religious background. I do not believe that a person’s life has worth outside of that person because it was given to them by a deity and I do not believe that one must experience suffering in death in order to truly see the wonders of God. I believe that each person should do as they wish, whether they wish to suffer in death or they wish to end their suffering; their wishes should be respected.

For this reason, I support palliative sedation, euthanasia and PAS in certain cases. However, I do think that it is important that the practices be differentiated. Again, this routes back to the idea of intention and the autonomy of the patient. The patient should decide what they intend to happen to their life. In the case of palliative sedation, the patient is deciding for their pain to be relieved; in the case of euthanasia and PAS, the patient is asking to hasten their death. Because of the difference in intention, palliative sedation cannot fully substitute euthanasia or PAS, or the other way around. The patient should be allowed to choose the intention. As Raus states, “a situation in which a patient requests PAS cannot always be properly addressed by offering sedation instead”.7 If the patient intends to end their life, that should be respected. Palliative sedation shouldn’t force the patient to compromise. If autonomy is to be respected, then the patient should have the right to choose between all of the alternatives. Some, like Callahan, might present the opposite case that if euthanasia or PAS are a quicker and cheaper means to the same solution, they should be favored over palliative sedation.8 Yet again, that is not true if the wishes of the patient are to be relieved of their pain and not to hasten their death. If this is the case, no patient should be forced to concede to euthanasia or PAS, no matter the cost, because it is going against their wishes.

In the case where a terminal patient has not stated their wishes, and is incapable of doing so, palliative care does seem to be the least morally problematic solution. It is still abiding by the medical philosophy of caring when one cannot be cured. The decision of whether or not the patient should also be sedated would fall on whoever has power of attorney over the patient. Regardless, this practice would be favored over euthanasia or PAS, because there is no intention to kill the patient; and therefore, no possibility that the patient is being killed against their wishes. Instead, they are being treated for painful symptoms, until their disease leads to their death. Any other side effect falls under the concept of double-effect. As put by Have, “the principle of double effect states that an intervention that has a foreseen bad outcome can nevertheless be morally permissible provided the intervention is not intrinsically evil, the bad effect is neither intended nor the means for achieving the good effect, and the good effect outweighs the bad effect.”5 Relieving pain is not intrinsically evil; rendering the patient unconscious or hastening their death was not intended, nor was it the means of relieving the pain (providing the sedative was the means); and knowing the patient is relieved of pain outweighs these potential side effect.

For the family members, all of these options might be emotionally difficult to execute. While this emotional response is normal and should be expected, their commitment as primary caregiver should be to respect the wishes of the patient. If their intent matches that of the patient, then morally they have done nothing wrong, as they are simply acting as an agent for the wishes of the patient. In Monica’s case, I believe her eldest son performed his moral duty to his mother. Monica had very explicit wishes for the end of her life. She chose to not be sedated until it was absolutely necessary, so that she could spend time with those she loved. Eventually, as she knew would happen, she was sedated to the point of unconsciousness, as the only means to relieve her suffering. This was an incredibly hard time for everyone, as it was, in a way, the final goodbye. While her son struggled with the idea that the dosages he was giving her could potentially lead to her death, he was morally correct in administering them. The intention was to sedate Monica in order to alleviate her pain, not to hasten her death. He fulfilled her wishes to rid herself of pain until one morning she passed away peacefully.

It’s taken me a long time to fully process Monica’s death. It was difficult to think of how the cancer had consumed her body. It has, however, led me to have a stronger stance on patient’s rights and autonomy. The cancer robbed Monica, the least she was due was to have control over her last days on earth. While the topic of hospice and palliative sedation is emotionally difficult, I think autonomy makes a simple ethical case, especially in situations like Monica’s. She wished to succumb to her illness without pain, that was her explicit intention. Palliative sedation matched that intention. I stand by the idea that had she wanted to hasten her death, either by euthanasia or PAS, it should have been her right to do so too. The physician’s intentions should match the patient’s wishes. That is the patient’s right.

For LGBT resources, please visit RELAY (Research and Education for LGBT and Allied Youth). RELAY is a project of Fordham University’s Center for Ethics Education which looks to advance the conversation about health for lesbian, gay, bisexual, and especially trans youth. Please also visit the resource page for creating an LGBTQ-inclusive classroom.

Videos during surgery? Some plastic surgeons go too far, Northwestern researchers say“
In recent years, some plastic surgeons have started posting videos of their surgeries on social media in hopes of informing and attracting new patients. But in some cases, their antics seem designed more for entertainment than education, raising ethical questions, according to a new paper from Northwestern Medicine researchers published in the journal Plastic and Reconstructive Surgery.”

Editorial: SF’s Ethics Board fails to tackle money in politics
“The San Francisco Ethics Commission had the opportunity to pass a commonsense measure to curtail money in politics. It failed. The ordinance would have banned the practice of allowing political donors to contribute to the charitable causes of favored candidates when those donors have a contract up for approval or a pending land-use decision in front of city officials.”

How to Get Away With Murder, or at Least Corruption, in Brazil
“No less than 40 percent of Brazil’s 594 lawmakers face formal investigations before the Supreme Court, the tribunal’s figures show. Forty-seven deputies and eight senators are currently defendants in criminal trials. Just two have lost their jobs over corruption charges.”

Veterans Agency Seeks to Scrap Ethics Law on For-Profit Colleges
“The Department of Veterans Affairs is pushing to suspend a 50-year-old ethics law that prevents employees from receiving money or owning a stake in for-profit colleges that pocket hundreds of millions of dollars in tuition paid through the G.I. Bill of Rights.”

Menendez trial: Prosecutors tie political donations to Menendez meeting
“U.S. Sen. Robert Menendez requested a meeting with a high-ranking State Department official to talk about port security issues in the Dominican Republic on the same day that Florida eye doctor Salomon Melgen agreed to donate $60,000 to help Menendez’s re-election and to fight a recall effort against him, prosecutors said Thursday. Melgen owned a 50 percent stake in a company, ICSSI, that was urging the Dominican government to honor a port security screening contract that could potentially be worth hundreds of millions of dollars, according to prosecutors.”

Business Ethics

Why values and ethics are good for business
“It is a privilege to be a trusted and integral part of a person’s recovery from addiction. So, I am deeply troubled when I see facilities cutting corners and bending the rules to increase revenue or profit. These actions are not only short-sighted from a business standpoint, but also highly unethical and potentially dangerous to those who have entrusted us to help them recover.

The Morality of Charles Koch
“For those who regard capitalism and Christianity as mortal enemies, few villains loom as large as Charles Koch, whose name in some quarters has become a synonym for a system based on greed and exploitation. By his own admission, the libertarian-leaning billionaire is not religious. So why would such a man choose the Catholic University of America for a $10 million gift to help relaunch its business school?”

Educational/Academic Ethics

Harvard Business School earns an incomplete in ethics
“Some argue that you can’t teach ethics to a bunch of 26-year-olds. But you can certainly lead by example. Alas, the recent example set by the leadership of HBS shows a blatant disregard for even the simplest of ethical considerations.”

Who should die when a driverless car crashes? Q&A ponders the future
“Should a driverless car swerve to miss a child, knowing it will kill its passenger? Or should it maintain its path and end a younger life? It’s deeply troubling ethical dilemmas like these that Sandra Peter believes will hinder the mass uptake of driverless cars, possibly beyond our lifetimes.”

Ethics of Internet research trigger scrutiny
A research paper that used publicly available data about people’s addresses and likely movements to unmask the anonymous graffiti artist Banksy “highlights growing concerns about the potential hazards of research that uses public data.”

Software engineers must think deeply about ethics
“I believe technology is immensely constructive and, like any power, if wielded correctly, can in fact make the world a better place. I still believe most jobs will be automated, and, in the long run, humanity will be better off from it. But great power must be accompanied by great responsibility, which remains largely absent in Silicon Valley.”

The Federal Policy for the Protection of Human Subjects, or the Common Rule was revised earlier this year and is set to be effective on January 19th, 2018. The Common Rule was created in 1991 to “better protect human subjects involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators.” Departments and agencies including, but not limited to, the Department of Homeland Security, the Department of Health and Human Services and the National Science Foundation made these revisions in an effort to “modernize, simplify, and enhance the current system of oversight.”

According to Dr. Fisher, the first change, stating that investigators are permitted to obtain broad consent from participants for future use of identifiable biospecimens by the original investigator or other investigators, “increases the ability of scientists to combine large data sets to explore important medical questions.” However, she says, “it is unclear whether hacking or the use of the identifiable information…will pose a social or economic risk to participants.” Dr. Fisher continues that it could be additionally problematic if “identifiable data is used to inform policies that promote medical discrimination of already vulnerable groups” without the research participants understanding how their data will be used in the future.

The second revision of the Common Rule that will impact informed consent practices states that investigators are required to give prospective participants a brief summary of “key points” that a reasonable person would want to know to make an informed choice. Dr. Fisher notes that this revision “can be an advantage over the current risk-averse legal language in informed consent materials,” but the revision does not state who will be deciding what the key points are which could be potentially problematic considering participants, investigators and IRB members may have different ideas of what “important information” is.

To read the full article and October’s Issue of Medical Ethics Advisor, please visit their website here. To subscribe to the journal, please visit AHC Media.

There had never once been a public opinion poll done in El Salvador until Ignacio Martín-Baró, a Jesuit, set out as the only doctoral-level psychologist in the country to measure the opinion of the people in the 1980s.[1] He knew this would be difficult. He had studied at the University of Chicago, and he was certain that he would need to practice very differently than how he had been trained. But he had still been unprepared for just how difficult it would be.

Much of Martín-Baró’s early conclusions were made on the fact that very few people would speak to him. Only 40% percent of the rich felt safe enough to speak their opinion. And the poor? Less than 20% of the poor would do the speak to him.[2] Less than 20% would speak to him about their lives, what they thought of the government, or anything that could get back to someone who could hurt them.

In his case, silence stood for more than an inconvenience to answer a pollster. It stood for more than a passive distrust of someone collecting data. In his case, silence told a story of gripping fear, of generations of pain, of mothers mourning children slain by an oppressive and violent government.

Silence says a lot, and it’s important that researchers take that silence into account.

I do not present my essay from El Salvador, though, much less an El Salvador in the throes of civil war like my introduction remembers. Instead, I present my essay from the United States. Martín-Baró was attuned to the differences between the countries. He remarked to an American colleague once that, “In your country, it’s publish or perish. In mine, it’s publish and perish.”[3] Indeed, Martín-Baró would later be killed, one of eight martyrs, in November of 1989.

I do not propose that he was mistaken. He was an American-trained researcher after all; he would know the dynamics between the countries. There is far more protection in the United States, particularly for the researchers today, than there was in Martín-Baró’s time and region. However, I do want to turn my gaze to those who cannot freely speak their mind in the United States, and posit that researchers can (and, I argue, should) take on their behalf, if they are to act in the heroic way that Martín-Baró did.

What does silence say in the United States?

To keep with the theme of religious leaders like Martín-Baró, I look to the Los Angeles area today. Since February 2017, there is an underground network of religious leaders who are readying their churches and synagogues and other places of worship to welcome undocumented immigrants who fear for their safety, families, and ultimately, their lives.[4] How willing are these immigrants, shrouded in mystery and protection from the religious leaders, to share their opinion, to have any identifiable information attached to them, to speak to accredited researchers? My guess would be that they are not so willing. Their words will not be counted. Their silence will have to tell their story

It is a well-known principle of research ethics that research which claims to be representative should not exclude any one demographic from its scope.[5] If the research is meant to be public opinion, it should be the opinion of a truly representative sample, inclusive of many differing opinions to make a conclusion on what exactly is public opinion.

I fear that, right now, it is impossible. Researchers who, for one example, would like to measure the experience and reception of immigrants into the country today, may not be able to count the words of the exact population they want to study.

Fear can fester when there is no information to counter the fear. “Fear” is a popular, political buzzword right now. There’s fear of the future, of the foreigner, of the freedoms that could be lost. Researchers–good researchers–could turn this around. Silence says a lot, but it cannot say enough. It cannot argue with stereotypes. It cannot present experiences to the contrary of belief. It cannot decide policy or fight against it. Something more is needed.

Public opinion research, as well as other kinds of research that seeks out truly representative samples, can provide this something more, if taking for its model someone like Martín-Baró. Ethnography combined with the desire to glean a truly representative public opinion, though such practices present their own problems, can be helpful. In marginalized and vulnerable populations, researchers have found value in such ethnography, in living among these populations to learn more about them than an outsider would. Confidentiality is necessary, as is keeping an objective eye even when entering compassionately into a different world.[6] An outsider hears only silence, and while I have already said that there is value in measuring such a loud silence, it is not enough, heralding the importance of such ethnographic research. I believe that researchers can allow silence to speak more than it has before. To articulate itself where it has only been absent.

But this is a challenge.

Researchers must make a very difficult choice if so undertaking that challenge. The religious leaders of the underground network have been publicly named lawbreakers. Ignacio Martín-Baró himself was martyred. I do not suggest it will go that far, but I do want to place researchers in a powerful, impactful role because that is where they belong.

Martín-Baró tapped into the difference that existed between Salvadorian and American public opinion research when he made the distinction between publishing and perishing. In the United States, public opinion research seems to be values-free. It is neutral. It is only an opinion presented in an objective report. Accordingly, research is largely protected. Those opinions, however, take on new color when paired with more controversial demographic questions in the examples that I raise. Should a population like undocumented immigrants be allowed a voice in research that concerns them? Are they part of a true American public opinion? How do their voices change American public opinion?

These are the questions that I believe need to be asked. Perhaps I am not the best one to ask them; I am no psychologist after all. With my schoolwork and work experience, I’m closer to a theologian. Even that label seems much too big for me.

Still, when I see that religious leaders are preparing to stand against injustice, even laws that they find unjust, I see them reaching beyond the obvious boundaries that exist for their line of work. They are reacting to policies targeting vulnerable populations, silencing those who are just as much a part of the culture as those who have the right documents that say they can remain in this country safely. I see myself called beyond my own boundaries as a student of theology. Likewise, researchers may believe that the value of their work lies in its neutrality, considering the scarcity of such neutrality in public spaces of the United States today. I want to press that, however, and wonder if this may be the time to see bigger purposes in each line of work. Research, particularly public opinion research, must look to the otherwise silent. The justice possible in research lies in this endeavor, not to mention the possibility of furthering injustice when ignoring the possibility to lift up the silent.

I am not cynical about where my country stands. I am optimistic. I think I must be in order to do the work I want to do, the work I talk about here. When there is a choice to increase justice, to lend a voice to the marginalized and silent, the option should be taken. Even in an otherwise neutral position like a public opinion researcher in the United States, there is an option for justice.

When voices can emerge from silence, then it is really saying something.

[5] National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects in Research. 9.

[6] National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects in Research.4